United Brachial Plexus Network

Hello all:

In case you don't know me, my name is John Anthony Ferrado, and I have a little boy Matthew, who is severe ROBPI, with 3 full avulsions and one partial avulsion. He's had both primary and secondary surgeries at TCH under Dr. Nath, and I've been on the message boards here at UBPN off and on since his traumatic birth. You might notice that my username is "angryparent" and those of you who know me know that I certainly started out quite "angrily", but my anger has turned to resolution and dedication, and I am using this energy to do whatever it takes to educate our politicians, the CDC and the AMA about this horrific injury, the lifetime nature of the injury, and it's devastating, lingering effects.

I am now actively working with UBPN on the In Touch committee for the National Proclamation toward recognition of the Brachial Plexus Injury, and I need your help. I would like to coordinate a concerted, organized and relentless campaign to contact EVERY SINGLE congressman, congresswoman, and senators of EVERY state - until we get the results and changes that our children & BPI victims desperately need. To that end, I am looking for one, preferably two "State Ambassadors" for every state, who have the time and dedication to take this on and be a part of our In Touch campaign. I am in Florida, and I will coordinate the effort for this entire endeavor.

I am looking for volunteers to e-mail, phone and write the correlating representatives for that persons state. I will show you where to find the information, as they have websites that provide everyone with the ability to contact them in each mode: Phone, mail and e-mail. E-mail is quick but somewhat less effective. Regular mail is slow, but more effective, and phone calls are quick and effective. Using all the above in repeated and consistent measures, will definitely get noticed.

It is my opinion that if every representative starts to get "inundated" with concerned parents, we'll start to see results. This is not going to be easy, quick or immediately effective. But persistence, relentless activity, and an organized effort will eventually, get results.

I will draft a series of letters to be approved by the board of UBPN for you to forward, and scripts for phone conversations as well. I have already written once to Dr. Bill Frist, the Senate Majority Leader. You can view that letter on the thread, "My Letter to Dr. & Senator Bill Frist". I will draft letters similar to this one for this effort for everyone to use.

Individually, we don't stand a ghost of a chance to be heard. Working together in a highly organized and relentless fashion, we WILL create change in how this injury is viewed, evaluated, prevented, treated, and how it is related to by the government, insurance companies, and especially, the medical community.

Here is my information:

John Anthony Ferrado
1420 Tim Court
Port Orange, FL 32129-7407

e-mail: crow63@yahoo.com

Home 386-788-9675
Office 386-615-3407
Cell 386-679-9327

Please feel free to contact me at any of the above numbers. I am in my office most of the time, and that is my direct line. I am a Financial Advisor with Morgan Stanley, and that is how I answer my phone. I hope to have this effort underway before the summer is over, so please contact me ASAP. E-mail usually takes me about 2-3 days to respond, so my office phone is best. I appreciate anything that any volunteer can do. I look forward to hearing from you
all!

God Bless,

John Anthony Ferrado

Hi John,

I am in Colorado and am excited to help! I emailed you privately with contact information.

Joni Sandoval

John,

This is exactly what needs to happen. We cannot thank you for your passion and commitment to this HORRIFIC injury. I agree, being organized will create a voice and being relentless in our efforts is a MUST.

In all honesty, how much time do you think each lead person in their state will need to truly commit? How often will contact efforts be made? Before committing some of us would like a realistic idea of how much time and effort we really need to dedicate to this cause, to give it our best.

Also, would you mind sharing a little more regarding the campaign? Will we be trying to tackle one issue at a time? Will we all be writing letters with the same concerns to maintain a focused effort for change one area at a time, or will we be combining issues and going for as much as we can at the same time? How often will we be writing? Any additional information you can share would be much appreciated.

And to those of us who aren't as politically savvy, could you please elaborate more on the National Proclamation. What exactly is it? How does the process work and what is the ultimate goal?

Again, thank you very, very much.

Hi everyone,
I posted on the UBPI Adult board to help in Washington State & emailed John my info too. Come on you guys let's swamp John with emails and telephone calls!!
Carolyn

Hello,

You asked: "In all honesty, how much time do you think each lead person in their state will need to truly commit?"

I don't want this to be a burden on anyone. This is why I will make it as simple as possible, with scripted letters and phone talking points. This effort shouldn't require more than 1-2 hours per month, if that.

You asked: "How often will contact efforts be made?"

Contacts should be made at least once each month, unless a response is heard. When responses are heard, we can discuss them and what route to take from there. We want to be as responsive and flexible when we determine we have a friend in our government.

You asked: "Also, would you mind sharing a little more regarding the campaign? Will we be trying to tackle one issue at a time?"

I will come up with a series of pre-approved letters designed to build upon each preceding letter. It does us no good to send generic, cookie-cutter propaganda without speaking to real issues on diverse levels. Each letter/e-mail will build upon the overall effects, ramifications, costs and consequences of the injury while speaking to many issues, some related to victims, others to the general populous, and yet others to government and corporate entities. I will provide more information on the campaign once we have a volunteer infrastructure in place.

With regard to the National Proclamation, I would defer to Nancy or Kath on that one. I too, would like to hear more about the details of that, however I am strictly focusing on this portion of the proclamation. I am one who puts into action, and will consider the details when needed.

For me, the ultimate goal would be an address before congress and the senate, whereby we could garner national attention to a topic that is not even getting attention from the medical community who is primarily involved. I want the AMA shamed into addressing this issue head on, until they mandate intensive training, and dire consequences for BPI injuries, up to and including loss of license to practice. I want at least one or two politicians to make this a national priority. I want OB/GYN's to be required to discuss this injury IN FULL with EVERY pregnant woman. I want the maker of Pitocin/Oxytocin, to compensate BPI & other victims of this dangerous drug, and to eventually remove the use of this drug unless medically required. I want article upon article on this issue to be read in every parenting magazine and guide. That, is what I would view as progress, and solid results.

Hi John,

I feel very strongly about the same issues as you, and I am just so thrilled to see a plan of action being initiated. Thank you so very much. You can count on Arizona being covered.

My teenage daughter recently met face to face with Rick Renzi, our Congressman, on Capitol Hill and discussed some birthing issues that I am quite passionate about. She had been hesitant to approach him and felt somewhat insecure, but she ended up catching him in the hall and they went on to have quite the discussion. He was very responsive and said "have your mother write me and I will personally get that letter to the AMA". He also shared his personal experience regarding the birth of his children and fully understood the issues at hand, which really surprised us. We were all so very proud of her to say the least. So who knows if we could really get Renzi on our side, but it will sure be worth a shot and he will remember my daughter and their conversation. I am certain of that.

I am joining in with Carolyn. Come on guys...let's all pull together here and help out. I think support group leaders are also wonderful people to step in since they have access to many families and they can encourage parents to get more involved. Let's get all the states accounted for here you guys! Who will be next?

Thank you so very much John, Kath and everyone else who has helped so much with this important project. John, I will email you personally.

With gratitude,
Lisa

John,

I just want to thank you publicly for stepping forward and taking on this huge role. I think the next year and a half is going to be very exciting as we build toward a National Proclamation at the next Camp. You are passionate and articulate and committed and I appreciate your leadership.

Now -- to answer the question raised by the previous poster about the National Proclamation and UBPN's plans. The National Proclamation can be done two ways and we will go for both of them. The first one is easy (well easy in comparison with the second one) -- it is a Presidential Proclamation and is issued from the White House. It is only valid however for that year in which it is issued. We cannot request it yet, we don't even know who the President will be in October of 2005!

The other way, which is to have it declared as a National Week for Brachial Plexus Injury Awareness is a bit more difficult and this is where we will need the community to help. It is a bill that goes through Congress. They (Congress) don't like to do these much anymore, preferring the Presidential Proclamation route, but if we are successful, this only has to be done once, and it will be our Awareness Week every year. It is done the same way as any bill that goes through the House and the Senate. It will need sponsors (members of Congress who will agree to sponsor), and that will be where we will begin the effort. We can't begin actually working yet, as again, we must wait for the new Congress to be in session. But we can begin putting our plan in motion, and the work that John and the In Touch Committee led by Kathleen Mallozzi does will be paramount in this effort.

I hope that answers some of your questions. We will certainly be sharing more information about how you can assist as the time approaches.

Nancy Birk
UBPN President

I wish to thank John for taking on this huge task and all those who will support him and UBPN in our efforts to bring OBPI into the light and out in the open. With volunteers speaking with one voice they will know we are here and we are looking for them to correct the mistakes of the past and make changes to prevent this injury and to protect the rights of injured.

We are hoping to go for the Presidential Proclamation at Camp UBPN 2005. By that time they will know who we are and why this National Proclamation is so important to us.

We can apply for a National Proclamation but without this work of bring BPI into national public light it will be meaningless. First we must get attention focused on this injury and end our campaign with the National Proclamation. At that point it is our hope that we will have the CDC and the NIH and the AMA recognize us and make the necessary changes to their practices so that we will have long range studies and total body impact and lifetime studies to support our needs as bpi injured people and families.

Kathleen Mallozzi
KathM@ubpn

In Touch Chairperson

Thank you Nancy & Kathy for the much needed details of the process and the path to acknowledgement. The only thing we are lacking now, are the people to make this happen.

I have acquired about 8 ambassadors so far, however there are 50 states. We're not talking about a major commitment here folks. I'll be organizing everything to the point that all you'll need to do is forward e-mail, letters, and make a once a month phone call. While I have enough energy and resolution to personally contact EVERY politician from here to Timbuktu, politicians tend to take their constituents MUCH more seriously, as YOU are the people who vote them into, or out of office. This is why state ambassadors would be much more effective than one man or woman. Help me to help you.

We need many more people willing to devote an hour a month to help our adult victims, and our children who've suffered this injustice. Won't you help to stop this insanity and allow all victims of BPI to stand up and be heard? Parents, I know how hard it is and all that you are going through, because I am going through it with you. I know the trauma, the therapy, the surgery, the constant worry, the neverending thoughts and emotions. But I'm not willing to let this continue, while other kids suffer lifetime disability due to ignorance.

There's nothing I can do for my little Matthew, outside of attempting to correct his diminished condition due to an ignorant doctor. But shame on me if I fail to act to save others from suffering the pain wrought upon my family. I will NOT let this go on. I implore you all, please, consider what we are asking, and get involved.

However, please know that if you cannot help or get involved, that we will press on with who we have, and I will personally redouble my efforts to make up for lack of a large volunteer force. In the end, we will succeed with whomever we have, which WILL benefit EVERYONE on this board. This is an effort being made to bring knowledge and understanding of this injury so that those of us who have already suffered, can experience improvement in the future benefits we receive from government, insurance companies, and the medical community. It will be MUCH easier to get the treatment you need for yourself or your children, once we force the powers that be to understand the true depth and scope of this injury. This will translate directly to having government and insurance companies cover more of future therapy costs, surgery costs, and techniques and pharmaceuticals necessary to provide relief and progress for those suffering from BPI. So the faster we get recognition, the quicker we will ALL benefit.

In the end, the government and insurance companies will move as slowly as possible when it comes to effecting change that they perceive, will cost them money. By illustrating that continued ignorance of this issue is costing them FAR MORE MONEY than addressing the issue, we can effect the change that will improve our lives. Without it, we will continue to suffer in silence, and forced to implement our own progress while suffering the burden we all do. Frankly, that is not a real choice.

So I urge you to join me in our quest for serious change, so that we may all realize a better life, especially for our children.

Thank you all for your consideration.

Should you decide that you wish to be a part of this historic campaign, then please e-mail me, or call me at any of the following numbers:

Office 386-615-3407
Cell 386-679-9327
Home 386-788-9675

Thank you for your time.

God Bless,

John Anthony Ferrado

John,

Could you please share which states you have ambassadors in?

One hour per month is practically nothing. What a unique opportunity to truly help precious babies and all those inflicted with this awful injury. Think of all of the time we spend with treatment, therapy, researching, reading this board, talking with other parents, etc. I am sure many of us could find one hour to do some very, very important work. And maybe some of us have a friend that doesn't come to these boards that may help us out. Has this been posted on the adult board?

I am sure hoping people start pitching in and maybe posting it on this board, besides just emailing John off the boards. Posting here will bump it up, but most importantly, seeing volunteers stepping in, may help strengthen a sense of momentum and bring motivation to others.